There are many ways your life can change, when you start caring for a person with a chronic illness. Several of the caregivers we interviewed spoke about their experiences of trying to balance many people’s needs at once—namely, the care recipient’s, those of friends and family, and their own needs as a caregiver. They describe how they made time for things that were important to them; or if they had lost the balance, what they did to try to find it again. Most caregivers agreed that a good balance was important to their sense of well-being, but that it was a struggle to find. There was recognition that even when balance was established, it could be easily disrupted as conditions changed, and that one had to be open to this reality.
I think it can be a really beneficial thing if you allow it to be. Again, I think it’s finding balance and knowing who you are and finding yourself and still taking care of yourself. I think, honestly, taking care of yourself first is the most important thing.
I think there certainly have been times like that. […]We were newly married and my grandfather had passed away, so we had essentially put in separate living quarters for us at the house where my mom was with my grandmother. And that was fine at the time, because we were newlyweds and we were both starting our professional careers anyway and it worked out for everybody.
Marc said, "It is continuously seeking balance, it is a constant search." Ginny thinks that balance in life is something she is still working on; taking the time for herself continues to be a challenge.
Right now I’m semi-retired. I’m a social worker by profession and I’m working part-time. I enjoy my work but I have to be careful that it’s not too much. I’m in the process basically of […] a transitional period, going back from vacation to my normal life. So, I have to kind of recalibrate that [transition] between professional life and caregiver. I’m also a painter and that kind of feeds the soul in a sense. So, I have to kind of juggle with all those parts. The challenge is that you don’t apply for the job of a caregiver. You do it because you want to. It’s sort of thrust upon you and you do it because you have to, but you’re not trained for it. I mean, there are some things that I do well and there are some things that I don’t do so well. I don’t have the kind of patience that trained homemakers will have. I do what I can, but sometimes I’m just not good at it. So that’s a challenge.
Challenges with balancing
The interviewees spoke of a wide range of challenges in finding the correct balance. It depended on a number of factors that included their personal situation, the needs of the care recipient, and the stage of life they were in. Some challenges were more difficult to resolve than others. For example, Ginny's life goes on hold for a little while when her mother has a crisis, until things get back to normal. Sheni started paying her daughter to care for her father, although the Public Guardian, who is supervising her husband's expenses, did not allow this.
I think she wants more time at this time to do more things on her own, than with my being here. That’s my thoughts. It’s terrible to say.
Dealing with a situation like this—the whole hospital scenario, the whole medical issues, the seeing their father in a coma, dealing with the fact that I was stressed out because of it. I was running back and forth to the hospital daily and including when SARS was on.
Making changes to find a balance
Almost all the caregivers we spoke to needed to make changes in routines, ways of working, and daily responsibilities in order to balance their day and get everything done. These adjustments depended on the caregivers' situation and what was feasible in their circumstance. Several caregivers opted to move to a more appropriate setting, and to reduce or change their working hours. Richard said, "I was the house cleaner, but I wasn't doing a good job. Eventually, Vivienne herself said to me 'Why don't we get a firm of house cleaners to come?' and eventually I succumbed. At first my pride said, 'I should be able to do this,' but then I finally realized, 'this is a lot of constant pressure on me. I'm not doing a great job of house cleaning.'"
Sometimes it required quite a bit of effort to make the right changes. For example, Donovan tried several different approaches for support with the care for his wife. For example, they hired someone full-time for a few years, and then had someone coming in part-time. Now , they have live-in caregivers. However, despite the extra help, there has been no reduction in Donovan's stress and tiredness.
I’ve never left the city because I’ve always been too concerned about her to leave. But I’m getting to the point where I’m 27 and I think have a right to live my life. She’s my mom and I know she wants me to live my life at the same time. So, I am toying with the idea of leaving, which is something I’ve always wanted to do.
When I started out with my husband’s income, it was cut. So, we were struggling with his pay. I actually made a list of all the provinces and chose which ones were too expensive; they were off my list. [A city in MB] is my hometown. I didn’t want to go back and I said, “Hey let’s go to Saskatchewan.” It was affordable. We bought this house, and we were able to settle down and retire.
Some caregivers found a better balance by making changes that affected them personally and directly. Rachel, for example, made new friends that were able to provide more support for her. Other caregivers found ways to have more time for themselves or with their partner.
In some cases, people realized they needed to change their way of thinking or their approach to caregiving in order to feel more at ease. Other caregivers were working on increasing their patience. Joanne managed to stop feeling guilty about having her own time, while Marc felt that the caregiving had also led him to appreciate the spiritual dimension of life.
So, there are some that learn just like that. That’s maybe the road I took. I learned like that. And it’s never all done like that. It’s never finished, it’s a journey. So, I’ve reached a point where I have much more serenity. I got up at night. It’s positive what I have in my head! I sing to myself and I fall back asleep. I mean, I have a lot of caring time to give him, and I give it.
My education was only through my doctor. But they told me how to take care. “Life,” he said, “well your lifestyle will be very different”, and certain medication he has to take which he never had before—also taking care of the food or lifestyle.
So, I came back here, my wife was in the hospital and, well, I slowly familiarized myself with the environment. It took some adapting to return. And so, that was… Then next, well, my partner returned and we started in terms of our relationship… a little different as well as seeing thing and I… Some requests were made, the difference at that moment was that before I left, while my perception or my views were, well, my partner is in a particular context, and I will do everything that is in my power to prevent her from suffering, so that she can enjoy life as much as possible. So, when she made a request, I tried to respond as much as possible, and then… But there were requests that weighed me down, or that I found heavy, that I had difficulty to respond to, or I was like reacting to, but with my view of things, it was to allow, as much as possible, to experience pleasant things.
Ok, when I had requests, I was there and I was weighing the pros and I could allow myself to say, “No, I’m not comfortable with that.” Or I would say, “Yes, okay, I will do it.” So, it was like different, and I was much more selective, anyway, in my perception of things. I was much more… When I returned, the demands were like… we said, “We tried organizing everything during the six months that I was not here, so you can continue to organize yourself, and you’ll use me the least possible.” And little by little, it was like balanced. There was a trade-off at one point. I was trying to fulfill all the demands. Then I left, responded to nothing at all. And now, I try to find a balance, a balance that I set to respond to the needs. It’s when I receive a request, sometimes, that rings inside, it’s grrrr… You know, I am like reacting, and I am not comfortable with that request, and at that moment, I’ll say it. And then in a normal way, I will say, “Well, I’m not able…” I will not fulfill it. And then sometimes….
Sometimes, maybe, I will… I will not be too comfortable, but I will think about it and […] this discomfort will fade away and I will be able to respond to this request. So, I am in the… and I am in the process of balancing, trying to have balance between what I am able to fultil, and what can be offered. Or the requests may be fulfilled by someone other than me. And I am in the process of managing that and balancing it. And I am aware that it’s not perfect. But, in any case, me personally I live much better in the situation I am here. I have the impression of having a better balance and…
Anyway, me personally, I live much better now.
Like Marc and Madhu, other caregivers also learned to make changes. Mike, for example, realized that, in the beginning, he wanted to do everything to help his wife. In time, he noticed that he had to take a step back: "After almost two years now I'm starting to finally realize this, that I actually have to be slacking off and let her do more what she wants to do."
I’m not a napper, so I don’t really find ways to make up sleep necessarily. But what we do [is]—Luke and I are good at strategizing with one another about if the plate’s getting too full—what else can we take off the plate? Because the caregiving is not necessarily going to decrease or get taken off the plate, right? You’ve got to find other things.
How do I see the future? Well, I guess as a family caregiver, for me the future is 5 minutes from now. I try not to cast a net too far ahead of me because I’ve learned in 34 years that things can change on a whim, and the idea for us in what we’re doing is maintain my mother’s current functional abilities and her quality of life.